Saturday, February 26, 2005

Support, Revisited

February 13, 2000
Unfortunately this update won't be quite as positive as the last. At the end of last week Timmi started experiencing quite strong pain in one of her elbows, which is the site of one of the largest of her tumors, as well as pain in other places where there were tumors in the past. Because she still has no detectable GVH, this is not surprising - we knew that the preparation for the transplant, in and of itself, would not keep the tumors from growing back. The pain is now more under control (though not totally eliminated), through an increased the dose of painkillers. Her mood could be better, to say the least, although there are ups as well as downs.

There is still a chance that the GVH will show up, as she discontinued her cyclosporin at the beginning of this week. If there is no GVH within the next week or two, she will start receiving interferon, a drug meant to "activate" T-cells and thus induce the hoped-for GVH and concomitant anti-leukemia effect. So for the moment we are mostly waiting.

As for me, I've been kind of wasted recently, functioning not quite as well as I have in the past. Hopefully this is temporary; I usually bounce back from these periods.

Shabbat Shalom and love to all.

February 26, 2005
As I’ve written before, one of the many very difficult things for me (and, I know, for other parents) about having and, especially, losing a child with cancer has been the seemingly unbridgeable gulf that this earthquake opened between me (and parents like me) and the rest of humanity. As I’ve written in earlier posts (see “Community,” October 2004, and “Support,” November 2004), that feeling of isolation can be overwhelming. It felt as though no one I knew would ever truly be able to understand what I was going through, other than my close family and other bereaved parents. That was why I joined my first support group, which turned out to be a disaster, and why I dared to join the group I’m now part of despite my traumatic experience last time.

I entered my present group with some trepidation, and after the first meeting I doubted whether the group would be able to do much for me. After all, I'd joined in order to meet other bereaved parents, and the group is composed of people who have lost any loved one to cancer. What would I really have in common with someone who lost a parent, for example? If there was one thing that used to drive me crazy while Timmi was ill and after she died, it was someone coming up to me and telling me that she “knew what I was going through,” because (for example) her mother was suffering from cancer. As hard as that experience is (and I know how hard it is, as my own mother died of lung cancer in 1996), it’s still in the natural order of things. Parents are supposed to die before their children do, and human beings have built-in, natural mechanisms for coping with a parent’s death. Losing a child, however, turns the entire universe upside down, and disorients those of us who go through it more completely than anything we’ve ever known.

Then there’s the feeling of having failed in our role as parents. Unless a parent-child relationship is unhealthy, most children – especially adult children – don’t believe their role in life is to keep their mother and father safe from harm. A parent’s suffering is hard to bear, as is our helplessness to alleviate it, and it’s always very sad to lose someone we cared for deeply. But the grief parents feel at witnessing the suffering and death of a child – this intensely beloved being that all our instincts scream at us to protect – is truly indescribable. (Although I must say that Robert Avrech has come very close to capturing that grief in his blog “Seraphic Secret” (see the Links section) and in the article he wrote for the Jewish Press, “My Heart Unhinged”).

As time went by, though, I found myself becoming more and more emotionally engaged with the members of my group. From the beginning, of course, I could identify with the two mothers who'd also lost children. But as I got to know the others better, and heard more about what they were going through, I couldn’t help but empathize with them. David’s words about his mother, who died when he was very young, brought back the loss of my own father when I was fourteen. When Ari and Jacob spoke of mourning their wives, I went cold inside to think how it would be to lose Don, and to live alone after so many years of love and companionship. Hearing all the group’s members speak of their deepest sorrow brought me closer to them, even to those who hadn’t experienced the illness and death of a child. Still, for many weeks I felt that I hadn’t gotten, and would never get, what I’d hoped for when I joined the group – relationships with with other bereaved parents, the only people who could truly understand me.

Then something happened at the meeting to which each of us brought a picture or an object (or both) connected to the loved ones we’d lost (I described this meeting in my previous post, “Making Things”). As the members of the group spoke of those they'd lost, and what these pictures and objects meant to them, I began to feel a very strong intimacy with the entire group. I felt I knew not only the members of the group, but something of their departed loved ones as well. And, almost miraculously, I felt that they'd begun to know me, and also to know something of Timmi. For the first time in what felt like forever, I began to feel a bond with a group of other people based on understanding each other’s deepest experiences. Neither I nor anyone else wanted the session to end when it did. At the next session, which was to be our last, we unanimously asked to go on meeting, and although it took some arranging, we will continue to meet in the foreseeable future.

I experienced a kind of illumination that evening. I saw, for the first time, how much I have in common after all with the others in the group, including those who aren’t bereaved parents. These people know, as I do, how it is to feel so wasted that they practically can’t function, but to go on doing what needs to be done because there’s no one else to do it. They know about cycles of hope and despair, and what it’s like to hold on even to the tiniest hope all the way to the end – and what it feels like finally to lose that hope. Their lives, like mine have been profoundly affected by their loss, and in many ways they also see lives in terms of “before” and “after.” With all the differences among us, all of us are in mourning.

Realizing all this was a watershed for me. I still see losing a child as the most traumatic experience possible, and can't pretend that I feel completely understood by anyone who isn't another bereaved parent. But although the divide between me and the rest of the world is still there, I now longer feel that it’s completely unbridgeable. If I can see my mourning in the context of any human being’s natural sadness at losing a loved one, if I can hear other mourners’ pain and be heard by them, then we do share in a basic human experience. However unnatural it is to lose a child as opposed to a wife, a parent or a sister, I can give support to – and receive support from! – people who aren't in exactly the same position that I am. It may sound like an exaggeration, but I am completely sincere when I say that, at least in this small way, I feel as if I’ve rejoined the human race.

Saturday, February 19, 2005

Making Things

February 3, 2000
This week was relatively "normal" for Timmi. She has been drinking enough, so her kidneys are back to functioning normally. Her blood counts and other bloodwork are also normal. She has been feeling relatively well, with some pains and weakness but nothing extreme. Her mood could be better, but in her situation some irritability is not in the least surprising.

We still have not seen any real signs of GVH which fact, though comfortable for the short term, is not so comforting for the long term, as we need some GVH to combat the cancer. She has been steadily reducing her dose of Cyclosporin (the anti-GVH medicine) and may go off it altogether next week. At least then her kidneys won't be in any further danger.

She spends a lot of time watching her video, and also reads and writes in her diary. This week she drew again with Judith Margolis, which she also enjoys. I hope that pretty soon she will be able to start attending some school, in a limited way.

There isn't really anything more to write, so Shabbat Shalom to all.


February 18, 2005
At this time in the yearly cycle of the Torah reading, we're reading the chapters of the Book of Exodus that set out detailed instructions for making the all of the material objects necessary for the priestly service. Last Shabbat, we read how to make the Holy Ark, in which God dwelt after giving the Torah to the Children of Israel on Mount Sinai, its altar, the tent that housed it, and its implements and coverings, as well as the Menorah, the seven-branched lamp that burned before God at all times. Tomorrow, we will read about the garments and breastplate of the High Priest, as well as the garments of the ordinary priests. The Torah goes into loving detail when describing these objects, which were to be made of the finest materials and at the highest level of craftsmanship.

One of the things to be learned, I believe, from the meticulous attention that the Torah lavishes on these descriptions is that making things can be a way of serving God. God made us in His image, and because God is first and foremost a Creator, we are also creative beings. By producing physical objects with the proper intention and with care, we may fulfill the commandment to strive to imitate God – “Be holy, for I the Lord your God am holy” (Leviticus 19:2).

At a recent meeting of my bereavement group, all of us brought pictures of our departed loved ones, or objects that reminded us of them. “David” brought a pendant that his mother, who died when he was eleven, used to wear when she put him to sleep. When she leaned over to kiss him, the pendent would fall over and brush his face. “Ari” brought a tape of a Spanish folk song called “The Song of the Birds”, that he and his wife of 42 years used to listen to, holding each other, every day for years. He hasn’t been able to listen to the song even once since his wife died. Others brought things their loved ones had used, or played with, or cared about, and many brought pictures.

I was the only person who brought something my loved one – Timmi – had made. (I also brought a picture of her smiling triumphantly, holding a pigeon that she'd spent half an hour rescuing from our neighbor’s balcony, where it had gotten stuck in some wire meshing. The picture captured Timmi's lovingkindness, and her intense desire to prevent suffering in the world.) It was one of many mementos she made for the girls in her group when she was a counselor in the Religious Scouts youth movement. I found it in a file she kept that contains, in chronological order, records of all her sessions with the girls. For each session, she carefully wrote down that day’s activities, the values or lessons the activities were meant to emphasize, how many girls came and whether the meeting was successful. Almost all of these descriptions were accompanied by a sample of the small presents (mementos) related to that meeting’s theme, which she'd made for the girls.

The memento I brought to show my group is a key ring, attached to a piece of foam rubber cut into an exact replica of the shape – the boot – of Italy, for an “Around the World” evening that Timmi planned and lead. She and the girls put on Indian makeup, cooked French food, saw a Spanish movie, and did all kinds of other things connected to various countries in the world. And for each of the fifteen or so girls in her group, she made a key ring with a different “country” attached. I can’t even calculate the amount of time she must have spent preparing this evening and making the girls’ gifts.

I brought the key ring to the group because Timmi loved making things. Her self-portrait hangs over the piano in our living room. Directly underneath, on top of the piano, sit two ostrich eggs that we bought on a family trip to the Golan Heights (yes, there is an ostrich farm in the Golan Heights). On one egg is a picture Timmi drew of a huge ostrich bending its neck down to a tiny egg she's just laid; on the other egg, a baby ostrich sits proudly next to the huge egg she's just produced, which is bigger than the bird. Many of Timmi’s friends have kept the presents that she spent hours making for their birthdays – a typical gift was a miniature scroll containing a story or a poem she had written, carefully folded into a matchbox.

Timmi’s name is derived from Ezekiel’s vision of the future Temple. “Timorim” are carvings in the shape of date-palm trees (“Tamar” means “date” in Hebrew), which Ezekiel envisioned as adorning the Temple’s walls and door. Like the Holy Ark and the other sacred objects described in this and last week’s Torah portions, these carvings are the product of exquisite physical craftsmanship harnessed to the ultimate spiritual end – to serve God.

We didn’t know it when we named her, but we truly got it right when we gave Timmi a name associated with a beautiful material object created to serve the highest spiritual Being. Timmi's name recalls not only her amazing creativity, and the meticulous care she invested in the things she made, but also the ends toward which she directed her creativity. True to her name, Timmi made physical objects in order to express her spiritual and emotional self – especially her love and concern for others – just as she did by writing stories and poems. And I’m extraordinarily grateful for this, because although she has left this world in body, the wealth of her creations keep her bright, loving spirit close to those of us who have remained behind.

Friday, February 11, 2005

Playing in the Snow

January 30, 2000
Timmi was released from the hospital Tuesday afternoon, after receiving five and a half days of hydration intravenously. Her kidney functions are now normal, after a fairly serious kidney failure caused by the dehydration and the very high level of the anti-rejection drug Cyclosporin in her blood. She is no longer sleepy or hallucinating, so we know that these symptoms were caused by the dehydration and not by the painkillers she is receiving, as we had originally feared. She still has some pain but it no longer wakes her up at night.

We are now waiting for clear signs of GVH; she has a couple of symptoms that might be it but we're not yet sure. It should be happening around now, though, so we are hoping (a) that it will come and (b) that it will not be too uncomfortable when it does.

Generally Timmi has been feeling fairly well the last few days, and even came outside with us for over an hour this morning to play in the snow. Her mood is also generally good, though she is somewhat impatient, which is of course totally understandable.

This last hospital stay was not as hard as hospital stays can be, as Timmi had a private room in the Pediatrics Department, but it was very tiring for me and I am feeling pretty much drained. Thank God for Shabbat!


February 8, 2005
It snowed in Jerusalem for a short time this afternoon. Wet snow that melted as soon as it hit the ground, but snow nonetheless. Jerusalem children love snow, which falls here every other year or so, and falls seriously (that is, “sticks”) only once every few years. Actually, although I grew up with snowy winters, I myself find it exciting when a real snowstorm hits – probably because I know that there’s almost no chance that it will last more than a day or so. It’s just a welcome break in the routine. I could use a break like that right now.

Five years ago, we had one of those big snowstorms that come to Jerusalem at most once every ten or fifteen years. Big, fat, dry flakes fell for hours and piled up in the garden and playground next to our apartment complex. We drove that evening to look at one of the most beautiful sights I know – the walls of Jerusalem’s Old City peacefully blanketed in soft, white powder. The next day, the sun came out but it stayed cold enough so the snow didn’t melt, and the streets filled with families playing, having snowball fights, and – almost a once-in-a-lifetime experience in Jerusalem! – building snowmen.

Like the other families, we went outside and built our snowman. Timmi absolutely insisted on joining us, even though she was still in some pain from the transplant. She took charge, dispatching her younger sisters and brother to roll the big snowballs, stacking them, adding snow to the sculpture and shaping it into the classic snowman, the one you see in films and comic strips. Scarf, carrot for the nose, the whole kit and caboodle. We have many pictures of her standing proudly next to the finished product, her face ruddy with cold and radiant with fun and happiness.

For that short time, Timmi was again the carefree, joyful girl that we had had the privilege of raising from babyhood; her shadows were banished, if only for that hour. I love looking at the photos from that day, and remembering those moments of joy. But at the same time, they remind me that there won’t be any more pictures of Timmi in the snow. Because, of course, that hour had to come to an end, and we had to take Timmi back inside. The snow melted soon after, leaving behind the sad and rather comic sight of sidewalks littered with dozens of carrots. Timmi returned to the struggle against her illness, her pain and her occasional despair. When the next winter came around, she had already left this world. She really did get to make that snowman only once in her lifetime.

Since translating Timmi’s poem in my last post (“Pain and Poetry”), I’ve been feeling sad much of the time. Recalling Timmi’s pain was, and remains, harder than I expected it to be when I wrote about it last week. When I’m not specifically busy with something else (work, cooking, trying to get the kids out of bed for school) I hear the words of her poem going through my head again and again. I could use some fine, powdery snow to go out and play with just now. I would love to be out there with my children, building and throwing snow and just being inside my body – together with these amazing beings that I once carried inside me – and giving my thoughts a rest.

February 11, 2005
I’m finishing this post on Friday. Real snow is now predicted, perhaps for tonight and more likely for tomorrow, Shabbat. So maybe my kids and I will get to play a little in the snow this year after all.

Since the time I started this post, I’ve undergone a condensed version – a kind of repetition in micro – of my larger mourning process. From being haunted by Timmi’s pain, and by her absence, I’ve returned to dwelling on the joy we had together, and her continuing presence in my life. If I go out and build a snowman tomorrow, it won’t be merely to distract myself from my pain at the memory of Timmi’s suffering, but to enjoy a happy time with my children. And my happiness will be tempered, but also enriched, by my memories of the good times we all had together when our family was whole.

Like that last snowfall, our time with Timmi ended too soon. But I feel deeply grateful that I had her to love, to play with and to cry with for eighteen amazing years. Each moment of those years came only once in my lifetime, and while I may not have fully appreciated them at the time, now I cherish them and will do my utmost to keep them from melting away.